My Multiple Myeloma journey

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Monthly Archives: January 2017

I had a good weekend. I awoke early this morning, anxious to work a full day. After all, two half-days last week equaled a whole day, right? My ailments as such right now have been minor, nothing too serious. My job requires sitting at a desk, so how hard could it be?

I found there is a difference in being mentally prepared to work and physically prepared to do so. Physically, it should have been easy, but it was not. Mentally, I would have been there all week. Physically, though, my body ran out of fuel this afternoon. I’m not sure if it is the radiation itself or the feeling that my hip stayed in contact with a nerve all day.

I write this to be transparent in how I feel and to document this for myself- even though I’m sharing it with you too. I just find myself having wanted a full day. It’s weird, I know, and ultimately not really worth the discussion I’ve given it.

At the suggestion of my radiation people this afternoon, tomorrow I will rest. Perhaps I’ll pray for patience….

In 3 short weeks, my “new year” got off to quite a different start than I’d anticipated. I guess that’s partly why people kind of joke about telling God your plans. Let me be clear, I dont for a moment believe He wished this on me or anything, but it’s clear He’s all involved in it. I can’t wait to see this big picture from another perspective.

I stayed out a little late last night. I got home about 10 (late-night partying…lol), hanging out with my 2nd D’ville family. I was tired, but this morning, I’m ready for church. My left hip continues to hurt, despite the right one supposedly being “worse”. I might ask the Dr if perhaps he flipped that x-ray over or something, as it doesn’t make sense to me why that is. Still, all in all, I feel really good health wise. By far, most “ailments” so far are minor compared with what they could be and most likely will be.

As I was reading stuff this morning, I grabbed my glasses and the online print jumped into much clearer view. The images were instantly clear, words more defined and the edges of words and sentences definitely were not as fuzzy. Did anything on the online pages change though? Of course not, they were the same. They were crisp and sharp all along, it’s just my eyes which are not perfect.

My glasses only enhanced what was already there- each razor sharp font detail, letter, number, question mark or symbol. The glasses changed no fact on the printed screen. The “truth” already printed, ready to be seen, shared, enjoyed or lived out was there. All those same details, also available to everyone equally.

Christians should do the same to God’s Word and Truth. Glasses enhance and so should we. Say we read that we should love others. To enhance it means you make it clear how to do it. We spend more time defending why it’s hard to love Group A or what Group B stands for politically, and then miss the enhancing the truth part.

Enhance: intensify, increase, or further improve the quality, value, or extent of

Made two 1/2 days at work…. I’m 1/2 way through the radiation treatments and the chemo this round is done (one week off it) so, I’m making progress.

It’s really the small things that I can celebrate sometimes. Water is better for you and if you know me, I don’t like water. I’ve drank it plenty but was getting tired of it. Now, grape juice, apple juice, coke and sprite all have no taste. Guess what I’m drinking… water… (and coffee). Haven’t tried tea, so I’ll try it today…

All in all, I’m still positive. Haven’t hit all the usual stages of grief- I really don’t feel like I will. I expected to, but oh well. If they’re down the road I’ll run up on them sometime.

The fact that co-workers/friends and family (actual and church) are rallying around to help and pray is an awesome feeling. It shows the Body of Christ in action. There are many like me, that find it hard to speak up- I never know what to say to others who face stuff like this. If you can, speak what you feel like saying. If not, I know you and I understand your silence from when I was silent in other situations before.

Know that I realize I’m not alone in this. I cannot fall because God’s in this and because so many of you are pressed in around me. I’m surrounded by those ready to steady or catch me at a moments notice. Thank you so much!

Continued thoughts from God’s Word …

For the person that has a “relationship with Christ, life is not lived in an attempt to obtain the victory, it is lived because of the victory! ”

I read the above (part of my devotion time) just now… wow. Do me a favor and read that again – whether you call yourself a believer or not– letting it sink in. The victory is the eternal hope we have in the relationship of faith we place in Christ. It’s not decided by how often we attend services, help the poor, don’t get mad and cuss or be nice to those who don’t deserve it.
“The despair of hopelessness tells us that we can never experience victory. The hope of Christ tells us that we already have.” (From devotional) These words are powerful and very reflective of scripture.
So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.

Met with the Dr and my platelets are up and something else was down (both of these were really good things). Everything medically is doing as well as it should or close to it. I’m pleased.

I was able to make it practically all day at work. I was tired by days end for sure. I didnt feel like I accomplished much, but it was good to be able to be there. I was up and ready earlier than usual for me….

It’s still humbling to know so many friends care. We usually mean it, we just hardly ever verbalize it. Spoken, out loud words, they plainly mean something. A friend pulling you aside to make sure you’re really ok and not just taking your words at face value- those things matter!

You can’t change everything. Change what you can or what you need to change.

I underwent the first of several radiation treatments to begin “setting” some of the rib bones yesterday. They’re also aiming at part of my left hip, so i may lose my “new walk” (if youve seen it, you may not miss it…lol). It could take only a few sessions to begin seeing results. I’m marked with squares, x marks and I got 6 tattoos today. I’d show you all the markings, but I’d have to lift my shirt and only a few would enjoy that (ok, really no one would enjoy it, so I’ll keep my shirt on). Hopefully zapping the lesions will allow my legs to move without pain (or as much pain) and keep the ribs from moving. Hmmm, that sounds like two results from one treatment. This procedure will be daily and should go rather quickly. Oh, about the tattoos, I was wondering if you thought I was joking… I did get six, but they’re medical ones, small dots. I didnt get to pick a dolphin, small flower, skull or Harley Davidson tattoo (should have took a picture of the grin i had typing that line out).

I also saw my Kidney Specialist and my kidneys are basically back to normal. Will follow-up in three months unless chemo tanks them or something.

Last but not least, visited with some really good people I work with yesterday. Many have called, sent texts, messaged on Facebook and asked about me. There’s a big line (the lion is later) of them jumping at the bit to help in some way. I’ve learned that the blog is being read and so I hope if you get something from it, you’ll realize that the message or encouragement comes from God, not me. If you don’t need it, maybe someone you know could use it, so share it with them.

The following thoughts came from my devotion reading yesterday (the actual devotion series is written by a member of the military on dealing with Hope after a traumatic event) but these are my takes after reading his. If interested, the series in on YouVersion & I can get the title to it. I wanted to share and keep you in where I’m at. Sorry, this update is a little longer, but felt it was good to get it all out.

…but those who trust in the Lord will lack no good thing…. Psalms 34:10

Trusting God can be tough. We like to do a walk-through first, see the hills, valleys, potholes and obstacles. We want to map out the curves, slow-downs and straight paths ahead of a race. No surprises on the journey, we just want to find the finish line. God says, “Climb on, I’m driving” and many of us at first eagerly jump on. Trusting God gets tough quick sometimes. Others around us take different routes, whether they are allowing God to lead or not, while others drive their own recless a d fun looking routed and we can find doubt sneaking in if not careful. “…If we continue to trust, we will lack no good thing…” This flies in the face of “I know better” or “let me do it” which most of us seem to have inherently live by shortly into our lives.

Lacking no good thing doesn’t mean you don’t experience bumps, falls or spills either. God leads over or around those obstacles as He sees fit. We are counseled around those too much for us and then over those that are a little scary, yet fun once it’s accomplished, in order to teach us. He teaches reliance when he can see the hill isn’t too big, but we cannot. He teaches trust when He knows we can, but we do not believe the same. He teaches love when we get half-way, get scared and fall over. In those moments, our Father lifts us, tends the scrape along with the hurt (those two are separate but connected) and then guides us again. God cares for the physical scrapes, the things that hurt us physically but also the “hurt”. These are the voices of doubt or shame that surface after mishaps. Feelings that you failed God, you should have done better, or you are not good enough. God is not interested in you living with such thoughts, so He will heal them also, along with the physical scrapes we encounter.

God knows the road you’re on as well as the road ahead and it’ll be a far better ride with him. It’s always your choice.

Well… I’d wanted to work today, but this weekend proved that my body said otherwise. The pain jumped on me from the ribs which started again after standing from a chair. All weekend, I’ve felt some ribs moving and just never got ahead of the pain in them or the hips.
Saw a doctor today and we’ve decided to use radiation to fuse some ribs together in order to stabilize them. Tried walking with a cane this weekend and just couldn’t support any weight to help with walking. We begin radiation on the ribs and probably the left hip tomorrow and they’ll continue daily for a few weeks.
I got good news, in that it looks like I can participate in an Emory study which basically is all pros and no cons that we’ve seen. I’ll still go to Emory further out for stem cell treatment, but this early study shows a lot of promise as well. Hopefully Emory will get me up there in a week or so, as it has to be done fairly quick from either diagnosis or treatment.
Still taking the chemo shots well, no nausea or side effects I’ve noticed. I’m taking them Monday and Thursday , so next week, I’m off them all for a week.

Got my 2nd chemo shot and still seem to be tolerating it so far. Thankfully the hiccups have ceased and deceased. Many thanks to everyone who offered advice on dealing with them. As one who has violent hiccups to begin with, they ravaged my sternum for about a full 24 hours, on and off. For now, they’re gone!!

Also got some results from the X-ray scans done recently. The X-rays show lesions, which are essentially where the marrow has overflown where it should be onto surrounding bones, all over. They’ve found them in my skull, spine, both upper arms, both hips, left jaw, ribs, etc. The marrow has about 80% myeloma, all of which is crowding out what should be there (I think white blood cells, red blood cells and plasma are supposed to be there. I should have paid more attention in school).

The pain I had in my ribs and back was from this, which is being mitigated by a pain patch. It is also what is causing it now in my hips. One option might be to X-ray just the biggest lesions in hip. I don’t really know if it’ll come to that or not.

They told me, after asking how I feel, that at 80% levels of myeloma in my marrow, they would expect to see me in a wheelchair barely able to hold my head up. I was a little stunned. Then, I thought, I could have milked this a little more. Seriously though, God is good through it all. The good times, bad times, sad or happy, He is faithful and I’m learning something at 48 with a whole new perspective. This is totally out of my hands. It’s up to God and meds to do their things in their ways.